Jacob's story

Jacob was born in October 2011. He had a massive bleed on his brain at birth, has heart problems, chronic lung disease and Noonans syndrome. Jacob always has lots of fun when he visits Bluebell Wood with his family. His mum, Kerry, tells his story.

“I’d had a high risk pregnancy with Jacob, and even before he was born, I’d been in hospital as his heart kept stopping and starting. Jacob was born at 28 weeks, weighing only 2lbs, but with lots of hair! The doctors told us then that he wouldn’t survive long, and he wasn’t breathing on his own. He was really poorly, and wouldn’t take any of his milk. He needed to have an operation to check if his bowels were working, but he was so tiny, they told us he might never wake up from the operation. Our whole world collapsed.

“After this, they had to put a line into his heart and he got a massive blood clot. We were then told that they didn’t think he would make it to Christmas. He was on full life support for 5 months. On New Year’s Day 2012, which was Jacob’s due date, he pulled out his breathing tube, and incredibly, started breathing on his own. He was still really poorly, and had to have two more heart operations before he was eight months old.

“When Jacob came home, I found out that I was 16 weeks pregnant with my third baby, Mia. That’s when we started going to Bluebell Wood. I needed to go for regular scans and ante-natal appointments, and having Bluebell Wood’s help meant that I could drop Jacob off there first, knowing he was in safe hands, and was being really well looked after. There was no-one else who could help feed him, and give his medicine, so having the support of the hospice made the biggest difference. He loved it and was so happy there.

“When I had Mia, I was in labour for three days. Again, Bluebell Wood looked after Jacob, so I didn’t have to worry about him. I don’t know how I would have coped with everything without the support of everyone there. Throughout my pregnancy with Mia, I was terrified of something going wrong again, so to be able to talk to someone who really understood meant so much to me.

“My eldest son Leo absolutely loves visiting Bluebell Wood as well. I had no idea how to break the news to Leo about Jacob – how do you tell a four year old about that kind of thing? The Care Team have helped me so much and given me some really good advice on how to manage Leo’s emotions.

“Jacob loves the attention he gets at Bluebell Wood, and we love being there together as a family. Leo also goes to their sibling group, and loves it. At the hospice, Leo can see other children like Jacob, and see that he’s not alone, and he’s not different. He doesn’t see disability, he just sees another child. Jacob loves everything about Bluebell Wood – they’ve helped my whole family so much.”

Tilly has hypoxic ischemic encephalopathy, which means she didn’t get enough oxygen to her brain when she was born. Now she comes to Bluebell Wood with her mum, Rebecca, and her big brother, Gabriel, where she loves meeting new people and relaxing in the spa pool.

William is Paul and Michelle’s ‘miracle boy’. Before he was born he had a stroke and spent the first nine months of his life in hospital. Despite facing so many challenges, William has never stopped smiling, and he loves coming to Bluebell Wood.

Mia was a happy, bubbly nine-year-old who was always on the go. In August 2018 she was diagnosed with a rare condition where the body reacts aggressively to an infection, and she died eight days later. Her family spend valuable time together at Bluebell Wood after she passed away.

Four month old Lily died at Bluebell Wood in February 2017 after being born with a rare heart condition. Her mum and dad, Ella and Ryan, call the hospice their lifeline, and they still visit with their son, Oliver.

Chester and Rhianna were born at just 26 weeks old in 2009, and they spent their first year in hospital fighting for their lives. Chester has brain damage and Hirschsprung disease, which means he can’t pass poo normally, and now visits Bluebell Wood for short breaks. His mum and dad, Lisa and Ian, tell his story:

Charlotte Lee calls daughter Gracie her snow baby. Born in January 2009 following a healthy pregnancy, Gracie’s arrival was a few months after young Sheffield mum Charlotte had received the surprise but welcome news that she was expecting. However, over the next few years Gracie had some developmental issues, which led to a sad discovery.

Olivia is a bubbly, chatty teenager who loves singing, and all things Harry Potter. She lives in Sheffield with her mum and dad, Michelle and Russell, and her brothers, Harry and Finley, and loves spending time at Bluebell Wood.

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